2015 news archive

As we prepare to see out another year and welcome 2016, tonight we'll be toasting our good fortune to have the support of such inspiring medicos, donors and volunteers, without whom we could not
offer life-saving heart treatment to Timorese who have no other option. So from our 2015 patients - Angela, Esmenia, Rita, Martinho, Veronica, Tomas, Ana and Rofina - and all of us at ETHF THANK
YOU for making all of this possible. We wish you and your families a very happy new year, and hope you will join us again in 2016 as we continue to save lives, and change lives.

After a rocky few weeks it's beginning to look a lot like Christmas for our patient Rofina. Rofina's recovery from her mitral valve repair three weeks ago did not progress as hoped, and so
last week our medical team and MonashHeart made the decision to operate again, this
time replacing three of Rofina's heart valves. Her recovery has been a rollercoaster, with many anxious moments for our medical adviser Dr Noel Bayley, surgeon Dr Jacob Goldstein and
MonashHeart's Professor Richard Harper. She has a long way to go but is now making a steady recovery. Today she was out of bed for the first time, including going outside for some sunshine and
looking at the ward's Christmas decorations. Rofina's likely to have a few more days in ICU, and if her recovery continues, several weeks of convalescence before returning to Timor-Leste in the
new year. We can only watch with awe at this tiny girl's fighting spirit and thank the skilled teams at MonashHeart and Monash Health.

Meet Scarlett, our littlest supporter, who has just
emptied her piggybank and donated an amazing $21.50 to help kids not much older than her who need heart surgery. Nice work Scarlett! Mum Emma and Dad Matt from Krushare very proud of their junior philanthropist.If you'd like to be like Scarlett and support our work
this festive season you can see our range of charity gifts hereyou can make a donation via our website here.

A hearty "benvindu" to Rofina, 14, and Ana, 21, our emergency patients. After a big day of travel from Timor-Leste (accompanied by the wonderful Alarico from Bairo Pite Clinic), the girls were weary but cheery. "We are a bit
tired but extremely are happy to be here in Melbourne. We are looking forward to our new life after the surgery," they told us before being whisked away for a beautiful Timorese dinner.

We asked 14 year old Rofina, our latest emergency patient, who
arrives in Australia tomorrow, how having heart disease has affected her life. "I feel sad because even walking 10 metres I feel tired and have to stop. Because of the disease I can't go to
school or play with my friends. My hobby is reading but I can't read my books," she told us."I am so happy to go to Australia because the doctor has told me
that in Australia people will help to cure my disease."Rofina will have her heart procedure next week,
at MonashHeart. We're looking forward to giving her back a normal
childhood.

We are proud and humbled to announce former President His Excellency Xanana Gusmão as a patron of our organisation. Minister Gusmão, a government minister and "the Father of
Timor-Leste", is a long-term supporter of East Timor Hearts Fund. We're looking forward to him playing an even greater role now that he is a patron.

Minister Gusmão described East Timor Hearts Fund as "a great example of compassion, friendship and effective action
by Australian people to assist their neighbour".

"I commend the East Timor Hearts Fund to you. I am proud to be a patron of this organisation and I hope you will also support and encourage its important work," he said.

Our supporters have seen the results of our work. Results like 14 year old Ana Clarita, who arrived in Australia in June 2014 critically ill and weighing only 24 kilos, now thriving and back
at school.

We’ve assisted almost 30 patients since our informal establishment in late 2010, with positive outcomes for all.

To confirm our effectiveness, recently we commissioned an independent social return on investment study, a social cost-benefit analysis designed to measure the value of the health and social
impacts created by organisations like ours.

The good news is that the research concluded that our model is highly effective and highly cost effective. The study found that for every dollar invested, our program returns $9 in
health and social benefits.

This means that our supporters can give with confidence, knowing that every dollar they contribute not only changes individual lives, but provides social benefits many times
over.

The study, conducted by Melbourne researchers Synergistiq, made the following findings:

Average estimated additional years of life: 32

Average quality of life increase: 89 per cent

Average additional ‘quality of life years’: 28

Value of additional years of life per patient: AU$66,304 per patient (Australian equivalent $1.3 million)

Social return on investment: AU$1 : AU$9

One of our patients told the researchers:

“Since the surgery I do not feel tired any more, the pains I had on my chest are gone, I can breathe so much easier now. I feel wonderful! I am now a mother of a 3 month old baby daughter.
When I look at her I thank God and ETHF for giving me the second chance in life.”

And while you can’t put a value on this sort of transformation, we think it is good for us, and good for our supporters and partners, to have evidence of the benefits of our approach.

To find out more you can download the document, or read it online here.

Today's ETHF Herogram is going out to our fantastic friends at Macquarie Telecom. They are a high performance crew at Mactel, and when staff received their annual bonuses recently, many decided to donate some to us.
Result - a whopping $10,000 in employee donations, which the company then generously matched. That's enough to provide heart surgery for several patients! Thanks Macquarie Telecom, your
generosity is inspiring.

With festive season fast approaching, we've teamed up with GoodCompany to solve your gift giving dilemmas. From as little as $2 you can buy a gift
that will make a real difference to a Timorese heart patient, and help us save lives. Find out more here

We are very pleased to announce a new partnership with Barwon Health​, which will be treating up to six of our patients a year at its Geelong University Hospital. A huge thanks to Deputy Chief Operating Officer
Peter Watson and cardiologist Alan Appelbe (pictured here with our CEO Ken Dusting) for their support of our work. We are really looking forward to our first Geelong patient, hopefully before
Christmas. Watch out for more news about that soon!

- Dr Noel catches up with some old friends, including Rita, Tomas and Agripino- Introducing our new CEO Ken Dusting- The generous schoolboys who went without birthday presents and emptied their piggybanks to help us!

Read the newsletter online here. To sign up for quarterly updates
click here.

We are very proud to share with you our 2014 annual report, which has just been published.

As well as a financial summary, the report showcases the patients we assisted in 2014 and some of our dedicated volunteers.

During 2014 our honorary medical adviser Dr Noel Bayley and our volunteer medical team undertook two missions to Timor-Leste, conducting screening clinics in Dili and outlying areas to identify
new patients and check on previous ones. We provided life-saving heartsurgery for six patients, including Ana Clarita, 14; Lucas, 15; and Melinda, 17. A highlight was having previous patient Nina
join us as our guest of honour at Run Melbourne, along with Tomas, who was enjoying breathing easily after having his heart procedure the previous week.

You can read the report online or download it. We hope you enjoy seeing our 2014
highlights and that you share a sense of pride in helping to enable us to undertake our life-saving work for young Timorese heart patients.

PS: A huge thanks to all of those who donated their talents to help produce the report: photographers Jorge de Arujo, Daniel Mendelbaum and Mat Lynn; graphic designers Struck & Spink and
writers and editors extraordinaire Fullpoint Media.

An exciting day for our patient Rita - she is now out of hospital and feeling better every day. Rita told us how she feels about finally being free of the heart disease that has made her life a
misery for the last 15 years: "For the first time I am able to breathe without having any pain on my chest, I can walk without feeling breathless, I don't feel dizzy like before and my appetite
is back.

"I feel so much happier now since the surgery. I am looking forward to going back home and enjoy my new life with my family.

"None of this would have been possible without ETHF, Bairo Pite Clinic,MonashHeart staff, donors, sponsors, volunteers and everyone that's been helping and support me and my husband since our arrival here in Melbourne.

"My family and I would like to say a big obrigada barak (thank you so much) for everything! May God a less you all!"

Our patient Tomas continues to make a great recovery and
is likely to be discharged from Royal Melbourne
Hospital tomorrow.He is able to do short walks and is loving the feeling of
breathing easily."I can breathe so much better without feeling any pain.
In the mornings here at the hospital I do small walks and don't feel breathless like before."I am looking forward to going back home with my new
heart and eventually find a job in the coffee plantation in Ermera, my hometown. Thank you to everyone that's helped me have a second chance in life. God Bless you all!"

It's been a long wait for our patient Rita, but she is finally about to have her heart procedure. Rita's heart procedure was postponed after a blood clot was found, requiring a course of
medication. But now her time has come, and surgeon Andrew Cochrane (pictured here with Rita and her husband Samuel at Run Melbourne on the weekend) will perform a mitral valvuloplasy and atrial
appendectomy at MonashHeart​ in the morning.
Rita, a school teacher and mother of seven, who has battled with the debilitating symptoms of her heart disease for years, is going to feel so much better once she recovers. Best wishes Rita!

There's a reason Rita is looking especially happy today - and that's because her husband Samuel has arrived to keep her company while she awaits her heart procedure at MonashHeart. Supporters will recall that Rita's heart valve
procedure has been delayed while she completes a course of medication to resolve a blood clot. Hopefully she won't have to wait too much longer and in the meantime it's a great comfort to have
her husband here.

It's a big day for our patient Veronica tomorrow but when our volunteer photographers Mat and Eric called past this afternoon she was all smiles. Veronica, who was born with ASD (known as "a hole
in the heart"), is having a procedure with Professor Richard Harper of MonashHeart​ tomorrow afternoon. Professor Harper is one of the best in the business, so Veronica has every reason to smile. We'll bring you an update
tomorrow. In the meantime, we're all wishing Veronica the best for tomorrow, the first day of the rest of her life.

Please pop past our marquee at Run Melbourne on Sunday 26 July. Friends and supporters are welcome. We'll be doing a big team pic around 8.45, so hope you can join us for that. If you're doing
the event you can also leave bags, spare clothes etc as we will have volunteers on deck. Look forward to seeing you there!

Life’s been tough for our latest patient Veronica, 18, who arrives in Melbourne later tonight. Her mum passed away when Veronica was two years old. Caring for her siblings and disabled father in
their mountain village has meant Veronica has missed out on schooling. Her heart disease (she has ASD, commonly known as a “hole in the heart”) makes doing her daily chores exhausting and
painful.

But things are looking up for Veronica. With her brother now helping to care for the family, she is in Dili with her uncle, where she may be able to go to school. She now has dreams for the
future, some big, and some small. “When I feel better, I would like to go to school, help my uncle's wife do the cooking and washing, and also playing,” she told us.

Today's ETHF herogram is going out to someone who is really, truly is a hero,
Mendezio (aka Dezio), the health support worker/interpreter from Bairo Pite Clinic who accompanied our patients Rita and Martinho to Australia.

Supporters will know that Rita's heart procedure has been delayed, because a blood clot was found pre-op, and this needs to be fixed with medication before our friends MonashHeart can go ahead with her mitral balloon procedure.

Overnight on Sunday at their accommodation near Monash
Medical Centre Rita became very ill with severe heart symptoms that left her struggling to breathe.

After some frantic calls to ETHF for advice, Dezio decided against waiting for an ambulance. Accompanied by Martinho (who had his own heart procedure only a few days earlier) Dizio physically
picked up Rita and ran with her to the emergency department where she was assessed, admitted and stabilised (and is now doing just fine).

This is Dezio's first trip supporting ETHF patients, so to deal with a crisis like this in the middle of the night, in the dark and cold, in an unfamiliar hospital, in a second language is just
amazing.

Dezio, 26, tells us that he likes to have new experiences, learn new things and help people. We're not quite sure this is what he had in mind though!

Rita and Martinho arrived in Australia a week ago, both expecting to have mitral balloon procedures at MonashHeart​ soon after. While Martinho continues to make a fantastic recovery after his procedure, treatment for Rita has been delayed.
Due to an unforeseen medical factor she will need to have a course of medication, and then come back to Australia in September to have her heart valve fixed. Rita, a schoolteacher who has seven
children, was devastated at first, and lots of tears were cried. But she's now feeling positive, strengthened by the care and support she's received.

"I feel that I have been blessed in the sense that I've been given this opportunity to come to Australia to receive the treatment and that I know my surgery will now be in September," Rita told
us.

"I feel positive that everything will work out for the best and I know that I am in God's hands and in a good care from the doctors and everyone involved.

A message from Martinho, who has just been discharged from hospital following his mitral balloon procedure at MonashHeart less than 24 hours ago:

"I can't believe how much I can now breathe without any difficulty after the surgery yesterday. I haven't had any headaches or dizziness since the surgery. I feel so humble and blessed to have
had this opportunity to come to Australia for a life-saving surgery.

I am now looking forward to going back home to my family and playing with my three children.

Obrigada barak (thank you so much) to everyone involved in saving my life. May you continue to do this amazing work. God bless you all."

Excellent news from MonashHeart...Martinho's
mitral valve balloon procedure, while technically a little more challenging than usual, went very smoothly and the preliminary assessment suggests an excellent result.

He should experience a dramatic and prompt improvement in his severe symptoms, and much improved life expectancy.

Unfortunately we've struck a temporary hurdle in Rita's case. She has an additional problem requiring an extended course of medication before we can proceed with her balloon.

The treatment has been commenced, she'll go back to East Timor next week, and return to MonashHeart in September for her procedure.

We are all disappointed, but confident of a good long term result.

As always, our gratitude and admiration to Professor Rick Harper and the rest of the MonashHeart team.

In a country in which the World
Health Organisation puts female life expectancy at 69 years, Rita Dos Santos Araujo, a primary school teacher, has lived to the venerable age of 47.

She has raised seven healthy children (all of whom are now studying at school and university) and educated scores more in her tiny schoolhouse in the mountainous village of Ainaro, in
Timor-Leste’s south-west.

What makes Rita’s achievements truly remarkable is that for many years she has had untreated, critical heart disease. The sort of heart disease that frequently claims the lives of pregnant women
and often their unborn babies as well.

She struggles up the steep track to school every day, because she is committed her students and her family.

“My life is not happy because the disease causes me to be breathless and dizzy, and it’s hard to climb up to the hill,” Rita said.

“I feel like the disease hampers my work but even if I feel it's hard I have to be patient to do it. Because if I don't do that, who is supporting my family?”

Rita’s condition is eminently treatable, but not in Timor-Leste, where there are no specialist cardiac facilities. And definitely not in the remote village in which she lives.

Rita is lucky to have produced seven healthy children. Lucky to have lived to an old age by local standards. And even luckier to have been assessed and identified for treatment in
Australia by East Timor Hearts Fund’s volunteer medical team.

Although established to assist young people with heart disease, East Timor Hearts Fund does not turn away anyone it can help. Rita, the oldest patient the fund has assisted, will arrive in
Australia on Saturday 13 June, along with another patient, father of three Martinho Alves, who also has critical mitral stenosis.

Next week eminent cardiologist Professor Richard Harper of MonashHeart in Melbourne will perform mitral balloon procedures on Rita and Martinho to repair their damaged heart valves.

It’s a technically complex but non-invasive procedure which does not even require a general anaesthetic. The results are typically miraculous, with patients up and walking within hours, enjoying
breathing easily and pain free, often for the first time in years.

Rita can scarcely wait to be liberated from her heart condition. “When I feel better, I'll continue to do my work so that I can support my family,” she said.

“For those doctors, donors and people who have helped to get me to Australia to have my operation, I'll not forget to say thank you very much for their kindly support.”

Help a patient like Rita before 30 June and boost your tax return. Donate

You might not have the skill of a surgeon or the millions of a big ticket philanthropist, but you can help us save lives - by taking a walk, or run, in the park.

Please join or sponsor our team for the Run Melbourne fun run. Last year we raised enough to give school teacher and father of three Tomas Pinto a heart procedure. Imagine what we can do this
year!

What

East Timor Hearts Fund is Australia's only medical aid charity dedicated to providing life-saving heart surgery for young people from Timor-Leste. We're doing Run Melbourne this year to
raise $20,000 to give a patient heart surgery. Options include 5k walk, 10k fun run and half marathon - so all fitness levels catered for.

Mums, and potential mums, are a big focus of our work here at East Timor Hearts
Fund. That's because untreated heart disease is especially risky for women of childbearing age, and their unborn babies. When women have heart valve damage caused by mitral stenosis their hearts
are often not strong enough to withstand pregnancy and labour. Tragically mums and babies can be lost. By providing heart surgery for young women from Timor-Leste we can help save two
lives.This Mother’s Day why not skip the slippers and chocolates and give your mum a gift
with real heart. The gift of life. You can make a secure online donation here (and you can even download a gift certificate to print and personalise for mum here).
www.givenow.com.au/easttimorhearts

Calling all foodies with hearts of gold! If you want to support our work in the most delicious way possible, please come along to a unique culinary event, Flavours of Timor-Leste. Create and eat some yummy traditional Timorese creations
with our beautiful friends Sabores de Timor​ with all proceeds going toward our life-saving work.

The workshops will be held in the delightful surrounds of CERES
Environment Park​ in Brunswick, Melbourne. Places are limited so if you want to be part of it, please don't delay in booking! Tickets from Trybooking.

A fantastic result for our patients Esmenia and Angela, who had mitral balloon procedures with professor Richard Harper at MonashHeart in Melbourne this afternoon. The ladies are up and walking,
and looking forward to a healthy return to Timor-Leste next week.

Esmenia and Angela have had their final pre-op checkup this morning with Professor Richard Harper ofMonashHeart. Their procedures are this afternoon. Both young women are feeling great
about the prospect of being healthy once again. They're looking forward to being able to play basketball and soccer again, and also returning to their university studies.

Please keep an eye on this blog and our Facebook page for updates later in the day.

Our patients Esmenia and Angela are in good spirits ahead of their heart procedures at MonashHeart tomorrow. They're already dreaming and making plans for their lives when they are healthy
again. Both love soccer and basketball are looking forward to playing again. Their studies have also been disrupted by their illness, and both are keen to return to university (Angela is studying
hospitality and tourism and Esmenia is in her final year of English studies).

They asked us to pass on this message: "We would like to thank ETHF,Bairo Pite Clinicand everyone involved for their help and support. We know that we are
in very good hands. Thank you also for all the lovely well wishes/messages on ETHF Facebook page. Obrigada barak!"

Please keep an eye on this blog and our Facebook page for updates tomorrow.

This morning we say a big bem vindo (welcome) to Esminia and Angela, who arrived on a very early flight. The ladies are tired but in good spirits ahead of their mitral balloon procedures at
MonashHeart this week.

A big thank you to Alarico from Bairo
Pite Clinic, who stepped in at short notice to accompany Esminia and Angela to Melbourne, and also our friend Inacio, for the chauffeur services.

We're excited here at East Timor Hearts Fund HQ, because on Monday our first two patients for 2015, Esminia and Angela, arrive. Esminia, 27, and Angela, 23, will be having mitral balloon
procedures at MonashHeart next week. They'll be
accompanied to Australia by right hand man Alarico from Bairo Pite Clinic​.

It's going to be a huge year for East Timor Hearts Fund as we increase dramatically the number of patients we treat in Australia - we already have a waiting list of 15 patients needing assistance
in the next 12 months.

We'd like to thank our regular donors, and those who have made a special contribution to help out. If you are able to support our work, and help make a life-changing difference for Timorese
patients who have other option for accessing cardiac care, you can make a secure online donation here (or see our website for other ways to donate).

Our volunteer medical team is just back from another successful medical mission in Timor-Leste. Over four days our team screened almost 100 patients, ranging in age from five to 71 years old. We
now have 15 patients on our waiting list (including Esminia and Angela), so a very busy 12 months coming up! Read all about it here, and if you would like to donate to support our work, you can do so here

Hi all from DiliA tired but happy team , with a short clinic tomorrow
before we fly back to Oz.We've seen a bit over 100 patients over three days
of clinics.About 50 new referrals, the rest patients who've already
had procedures (all with outstanding results, both technically and in terms of quality of life), and patients we're monitoring until they need intervention.Some of you may remember Arminda, the frail, very ill
little girl who was featured on the front page of The Sunday Age before her mitral valve balloon. She's now in robust health , I swear she's grown 25 cm!
She caused us enormous anxiety at the time of her procedure, amply repaid by the result, as you can see from this photo.
You can read more about Arminda's journey to health, and view our volunteer photographer Mat Lynn's moving photos, in The Sunday Age.

Coffee plantation worker and father of one Agripino received a heart check up from Dr Noel today, and is doing really well, as you can see from this photo. Agripino had struggled with his
physically demanding work picking coffee due to the symptoms of his heart disease. But following a heart valve repair at Royal Melbourne Hospital last September his heart is now in great shape.

You can read more about Agripino's amazing journey in this story by Rachel Kleinman in The Agehere

Nina (pictured here with our right hand
woman Fati from Bairo Pite Clinic) had her mitral balloon procedure in November 2013.
Sporty Nina had been laid low by her heart disease, but was looking forward to being able to play volleyball again. She got her wish, and also impressed us by making a special visit to Melbourne
in July last year to be our team guest of honour at The Age Run Melbourne. Nina's now in great health. We may even be able to
persuade her to come and do Run Melbourne with us again!

School teacher and father of three Tomas had a mitral balloon procedure at MonashHeart last year. After enduring years of pain, dizziness and weakness, he felt so great within days of his procedure that joined our team at
the The Age Run Melbourne fun run. Dr Noel and the team caught up with Tomas in Dili and as you can see, he continues to be in great health.

It's hot, technically and logistically
challenging and emotionally draining. But at the end of another tough day, our volunteer medical team is still smiling. Pictured are board member and patient support coordinator Ana Saldanha, the
legendary Fatima Mendonca from Bairo Pite
Clinic, board member and clinic
organisational whiz Julie Kean, and Deakin Uni med students Zoe
Baudinette and Rosie Seagar. Three cheers for the volunteers who make it possible to bring world-class cardiac care to patients from Timor-Leste.

Dr Noel, in Timor-Leste with our volunteer medical team, met up with our previous patients Jeca and Melinda, and reflects on the challenges and rewards of the role.

Like any other form of activity working as a volunteer for the East Timor Hearts Fund has its share of tribulations and irritations, and there are times when it all begins to look too hard.

Then (see photo) something like this comes along.

Jeca and Melinda were facing certain death from heart failure in the very near future before their procedures in Melbourne last year.

Both are now in excellent health, with technically superb results from their mitral valve balloon (thanks, Prof Rick Harper of MonashHeart) and mitral valve repair (Marco Larobina and the Royal Melbourne Hospital team) respectively.

Here's a couple of indispensable volunteers. Translator and
patient support coordinator Ana Saldanha, and board member and clinic organiser Julie Kean. Assisted by our friends from Bairo Pite Clinic, Julie and Ana keep our screening clinics humming along,
and make sure that patients are informed and involved in the process. They do a fantastic job, so we want to tell the world how much we appreciate them.

Our volunteer medical team, which
includes Deakin University med students Zoe and Rosie are just finishing
after a long day of patient examinations. They're doing clinics at Bairo Pite Clinic, screening patients for heart disease that we can
treat in Australia. We're still awaiting a full report back but by all accounts it's been a productive day. Thanks for your messages of support. They are really appreciated by our hard working
volunteers.

Dr Noel and our volunteer medical team - board members Ana Saldanha and Julie Kean and Deakin University​ med students Rosie and Zoe - are off to Timor-Leste tonight. They'll be doing screening clinics at Bairo Pite Clinic and also in the hills at
Maliana, about 150 km south-west of Dili.

It will be an action packed few days, and it starts as soon as the team steps off the notorious "red-eye" flight from Darwin early tomorrow morning.

This Australia Day we’re celebrating how we’ve worked together to deliver world leading cardiac care to young people from Timor-Leste. Watch this two minute video to see how teenage heart patient
Melinda’s football dream came true.